A ribbon of my own design. The blue signifies dyslexia awareness while black and white are shades that I find especially difficult to look at. The coloured dots are my ‘pixel vision’

There are a number of events throughout the year raising awareness for dyslexia. The recent ‘guerilla’ campaign by Decoding Dyslexia to raise awareness through the tag #ShowMe1in5 through social media seems to have been pretty successful (there are still people sharing the links on Twitter a I write this blog). Also Dyslexia Advocacy Week has just passed where I shared a video per day featuring a variety of dyslexic people talking about their experiences and their progression and success. However, I want my blog to cover not only dyslexia, but also Scotopic Sensitivity Syndrome aka Irlen Syndrome. Having searched on Google (as you do) I have been unable to find a specific day or week dedicated to raising awareness on this specific learning difficulty that has links to dyslexia. So for this reason, I have decided to set aside this weeks blog to discuss Scotopic Sensitivity Syndrome in hope to raise awareness of what it is!

While 1 in 5 may have dyslexia, it has been suggested that 1 in 7 or as many as 1 in 6 of the population are affected by Scotopic Sensitivity Syndrome. So here are some facts and issues linked to Scotopic Sensitivity Syndrome to hopefully give you a better understanding of this specific learning difficulty.

So what is Scotopic Sensitivity Syndrome?

A definition taken from Wikipedia:

Scotopic sensitivity syndrome, also known as Visual Stress, Irlen Syndrome, and Asfedia, is a condition relating to the interaction of the central nervous system and the eyes at a physiological level with light. It manifests itself most notably in terms of reading, although the symptoms of the condition can be more general than this. The condition does attract some controversy not in terms of its existence per se, but in the efficacy of reputed methods of treatment. Some experts whilst accepting the existence of the symptoms, question whether this is a homogeneous condition, or if one or more co-morbidities around another core condition, are not being confused with a homogeneous one. The condition is however recognised as a homogenous condition by an international body of expert opinion.

Similar symptoms were separately described by two people working individually, each unaware of the other’s work. In the early 1980s New Zealand teacher Olive Meares described the visual distortions some individuals reported when reading from white paper, while American therapist professor Helen Irlen wrote a paper about the use of coloured overlays aiding the reading abilities of some people. Irlen, who was the first to systematically define the condition, named her findings “scotopic sensitivity“, though in the discussions and debates over the following years some referred to it as Meares-Irlen syndrome. There remains to this day stark controversy over whether non-Irlen-certified Meares-Irlen Syndrome and the original Irlen Syndrome are the same condition. Irlen Syndrome for example, seems to include a broader array of symptoms, including severe variants of the core condition. Basic testing for scotopic sensitivity was tried by optometrists, opticians, and orthoptists in UK hospitals, and by optometrists and opticians in private practice employing a technique that used the Intuitive Colorimeter, developed under Medical Research Council license. An alternative approach to correct Irlen Syndrome was also tried by Orthoscopics franchise in the UK, with wide color coverage and tints manufactured by Hoyato match. Other commercial organisations have produced sets of therapeutic tints, although most have not received scientific evaluation

As said in the Wiki source, “the condition does attract some controversy not in terms of its existence per se, but in the efficacy of reputed methods of treatment”. Some people with Scotopic Sensitivity Syndrome find that specially made tinted glasses help them alleviate symptoms, others use coloured overlays (see picture on left), reading rulers, screen changing software etc. It seems that reducing the stark contrasts, especially while reading black text on white, by using coloured filters makes a significant difference for many with this condition. There are specialists who can test what colours are most suitable to you and also look into special glasses, but it seems to be very much trial and error.

Scotopic Sensitivity Syndrome and Me

Though I wasn’t diagnosed with dyslexia until I was 25, it was suggested to me in high school that I had Scotopic Sensitivity Syndrome and was given rose coloured overlays. My exam papers were printed on pink paper and I was given extra time as a slow reader. In the 15 years since I was told about Scotopic Sensitivity Syndrome and given my first overlay, the colour that I find beneficial has changed several times. It changed from rose to aqua to purple to orange to blue. For this reason, whenever I have seen those who work with Specific Learning Difficulties (SpLD) they have all told me that the glasses given to many sufferers of Scotopic Sensitivity Syndrome would be of little use to me. I have been recommended trying camera filters in a previous blog post by one of my readers. I will be trying this out when I have a spare moment to see if it helps at all.

As previously mentioned in Dyslexia and Me: What you see, What I see I see in pixels, which is due to the Scotopic Sensitivity. I found another page on Friday by Alison Hale who also has Scotopic Sensitivity Syndrome. She have also put some visual interpretations of what she sees through her eyes: My World is not Your World. I always find it interesting and worth sharing as much information by others with the same condition to give a better idea to those who haven’t seen through our eyes.

I suffer from a lot of headaches and migraines especially while studying. Sometimes it’s due to the stress of trying to keep up with the workload but most often it’s due to my vision triggering it off. I have taken to wearing my hat a lot (see: Dyslexia and Me: Get Some Hattitude!) but I can be found walking around the house in sunglasses when I have a bad headache or migraine. Before going back into education, I did suffer a lot with headaches when I worked in an office. It’s in hindsight that I realise this was due to the room being white with strip/fluorescent lighting. It’s one of my biggest worries when I graduate that I am in a work environment where migraines are triggered by the decor and lighting.

Attention and concentration difficulties are caused as a result of these visual distortions. Scotopic Sensitivity Syndrome impairs the ability of the individual to read, study and work efficiently and it often causes our eyes to feel uncomfortable. This lack of attention will probably display itself in one or more of the following ways:

difficulty staying on a task such as reading or studying

taking frequent breaks

restlessness

tiredness

I have issues with all of those. I take frequent breaks, the problem is that I get distracted in my breaks from studying and find something ‘more interesting’ to do (like writing this blog or trying to advertise it out on social media). I can’t sit for a full hour in lectures without having to take a break either, which is far easier now I have a digital recorder and a laptop. My brain just goes into overload with the visual and audio! It’s a struggle, but I love learning!

Restricted field of clear vision is something I really struggle with. When I’m reading I sometimes only pick up on a couple of letters at a time. It makes it extremely difficult for me to skim read so while others chomp through books, I’ll still be struggling away. I also skip lines or reread the same line several times because I eye doesn’t move down to the next line. I’ve found that my coloured reading rulers have been useful for overcoming that, but are a pain in the butt when you’re trying to read a lot so I only use them for leisure purposes than for university. It makes reading more of a task than a pleasure for me when you find yourself rereading the same thing.

Reflection on Scotopic Sensitivity Syndrome

Although I have dyslexia, it’s the visual side that has a profound impacts the most on my life. Even when I am not reading or writing, my Scotopic Sensitivity Syndrome makes my perception of the world sometimes pretty difficult. I am also short sighted. Though I found I had issues with depth awareness in the past, my glasses have fixed that issue for me and I am far better at catching a ball and avoiding walking into tables (though I still often find I have bruises from walking into things when I am sleepy). I often also see things in my vision when I am really tired, which makes me think there’s a spider in the room and I end up jumping a mile in the air! I know it’s time for bed when I ‘start seeing spiders’.

When asked ‘would you rather go deaf or blind’ the majority of my friends instantly respond with ‘deaf’ as they rely so much on their vision and know they could get around it with sign language or subtitles on TV. For me the answer would be ‘blind’. With short sightedness and Scotopic Sensitivity Syndrome my vision is already pretty rubbish but I am also a great lover of music. I’ve been playing music (by ear rather than from sheet music) since I was 3 years old, demanding aged 2 to listen to Genesis before I would go to bed and been going to see listen to live music for as long as I can remember. To be deaf would be the worst thing for me.

I hope that this blog post has helped to raise the profile a little bit on Scotopic Sensitivity Syndrome. I am not an expert in the field, just someone with the condition. If you want more information you will need to consult Mr Google and see what’s in the search engine, I can only tell you of my experiences rather than tell you the details (something to do with cones and rods in your eyes?).

Unfortunately as a poor student, I cannot afford to pay to have the blog customised with a coloured background. The majority of websites online are white with black writing and that’s why I have software on my laptop to change the colour as I need to.

I just scheduled appointments at the Irlen center for my daughter. They told me that although the end glasses might have a color (let’s say pink). That the plastic coating is actually multiple layers of colored coating and each color filters a particular frequency of light. The end result should be that florescent lights no longer bother my daughter and that she will be able to read one line at a time without skipping or losing her place.